Citing privacy concerns, US panel urges end to secret DNA testing

Advances in genome sequencing may bring human health benefits, but we must ensure that the price is not our lost privacy, a report by the Presidential Commission for the Study of Bioethical Issues warns

By Sharon Begley / Reuters, NEW YORK

Illustration: Yusha

They’re called discreet DNA samples, and the Elk Grove, California, genetic-testing company easyDNA says it can handle many kinds, from toothpicks to tampons.

Blood stains from bandages and tampons? Ship them in a paper envelope for paternity, ancestry or health testing. EasyDNA also welcomes cigarette butts (two to four), dental floss (“do not touch the floss with your fingers”), razor clippings, gum, toothpicks, licked stamps and used tissues if the more standard cheek swab or tube of saliva is not obtainable.

If the availability of such services seems like an invitation to mischief or worse — imagine a discarded tissue from a prospective employee being tested to determine whether she’s at risk for an expensive disease, for instance — the US Presidential Commission for the Study of Bioethical Issues agrees.

On Thursday it released a report on privacy concerns triggered by the advent of whole genome sequencing, determining someone’s complete DNA make-up. Although sequencing “holds enormous promise for human health and medicine,” commission chairwoman Amy Gutmann told reporters on Wednesday, there is a “potential for misuse of this very personal data.”

“In many states someone can pick up your discarded coffee cup and send it for [DNA] testing,” said Gutmann, who is also the president of the University of Pennsylvania.

“It’s not a fantasy to think about how, without baseline privacy protection, people could use this in a way that would be really detrimental,” such as by denying someone with a gene that raises their risk of Alzheimer’s disease long-term care insurance, or to jack up life insurance premiums for someone with an elevated genetic risk of a deadly cancer that strikes people in middle age.

“Those who are willing to share some of the most intimate information about themselves for the sake of medical progress should be assured appropriate confidentiality, for example, about any discovered genetic variations that link to increased likelihood of certain diseases, such as Alzheimer’s, diabetes, heart disease and schizophrenia,” Gutmann said.

The commission took on the issue because whole genome sequencing is poised to become part of mainstream medical care, especially by personalizing medical treatments based on a patient’s DNA.

$1,000 GENOME

That has been driven in large part by dramatic cost reductions, from US$2.5 billion per genome in the Human Genome Project of the 1990s and early 2000s to US$1,000 soon. Several companies, including Illumina and Life Technology’s Ion Torrent division, sell machines that can sequence a genome for a few hundred dollars, but that figure does not include the analysis to figure out what the string of 3 billion DNA “letters” means.

A three-year-old federal law prohibits discrimination in employment or health insurance based on someone’s genetic information, but does not address other potential misuses of the data. Without such privacy protection, Gutmann said, people may be reluctant to participate in genetic studies that do whole genome sequencing, for fear their genetic data will not be secure and could be used against them.

Recommendations from such panels are not binding, but have been used as the basis for policy and legislation.

One scenario the panel offers is a “contentious spouse” secretly having a DNA sample sequenced and using it in a custody battle “as evidence of unfitness to parent,” perhaps because the DNA showed a genetic risk for mental illness or alcoholism. There are no federal laws against that.